Hi! I'm new to this thread/site.
I was just wondering if anyone has any for sure or most likely answers?
I took accutane from april 2010 to the end of august 2010. I had the normal side effects, dry lips, dry skin and... no acne.
In november of 2010 I noticed that my hair started shedding RAPIDLY! I would wake up and my pillow would be covered in hair!
And now it seems my side effects are getting worse
The side effects I still have are:
-Dry eyes
This just started again around three months ago. Its progressively gotten worse.
-Dry skin/Aging
I have wrinkles and sagy skin, and I just turned 20
-Hair loss
My hair continues to fall out and grows very slowly
-Intestinal issues
I became very sensitive to dairy (I've never had problems with dairy before)
Constipation.
Sensitivity to spicy foods. (Which sucks because I love hot hot hot food)
-Moodiness
I've definitely had the suicidal thoughts and bouts of irritability.
In june I began taking supplements for my hairloss. Up until I read this thread I was taking
-Saw Palmeto
-Biotin
-MSM
-L-Cysteine
-Vitamin E
- This hair skin and nails vitamin http://www.iherb.com...lets/22419?at=0
-Vitamin D
-Iron
I'm not seeing improvements and I don't know what to do. When I try to tell people what I'm going through they either don't understand or don't believe me.
Can anyone recommend a supplement or plan of action for me?
Have you tried something that actually worked?
I'm willing to do anything to get this terrible drug out of me.
I would advise you to see the hairloss thread. Esspecially if you are having tons of loss and no regrowth. Though there is a lot of merit in this thread, Accutane does cause autoimmune and hormone problems in some. Outside of the supplements what other things have you tried and have you had some labs done. Some come up postive and in others thier labs are fine.
As for the eyes stay away from acidic foods and possibly see a eye doctor. There is also some info for severe dry eyes in the hairloss thread. For me I developed Sjorgrens from Accutane. Though some Accutane suffers have been okay with Saw Palmeto I advised you to stop it as it along with propecia can have the same effects as accutane.
I finished collecting and prioritizing my research on Accutane damage repair and recovery.
Top priority is liver, secondary is digestion. Most of the stuff targets the liver.
These are ranked in order of priority
I'm super pumped... this stuff is going to work.
TUCDA:
http://www.amazon.co...s/dp/B001183UWU
Tyler's detox:
http://www.theafstor...hp?productid=17
better price: http://www.healthdes...rs-120-capsules
livercare:
http://www.amazon.co...bxgy_hpc_text_c
now foods liver detoxifier:
http://www.amazon.co...ef=pd_sim_hpc_2
lecithin
http://www.amazon.co...2154&sr=8-5
probiotic
http://www.amazon.co...2963&sr=8-2
Ultraclear sustain
http://www.amazon.co...s/dp/B004GLCWZU
milk thistle phytosome
http://www.amazon.co...0058&sr=1-3
Garden of Life O-Zyme
http://www.amazon.co...4846&sr=8-1
coconut oil
http://www.amazon.co...2635&sr=8-3
dandelion root tincture
http://www.amazon.co...9818&sr=1-1
glutamine (leaky gut)
http://www.amazon.co...3390&sr=8-1
Hate to put a downer on your excitement, but I felt the same when I bought Livercare and the Now Foods regenerator/detoxifier.
I was taking them for over a month, but didn't notice anything. Not that I'm saying they'd work that fast.
I've stopped them for the time being, because I'm taking a different liver (and kidney) formula.
As for coconut oil, I don't know what you're expecting, but I've been using it for several months and it doesn't do a thing for our symptoms (though it's a good oil nonetheless).
I used to take dandelion root for a few months and never improved.
Glutamine.. I've taken before. I forget why. I think I was taking it to help digestive issues, but it didn't do anything.
I've used lecethin and milk thistle phytosome.
Obviously, I needn't say they didn't help.
After Luke's comment, I feel a bit hopeless about this whole thing.
I'm constantly living with 'getting better one day' in mind.
I don't want to live like this for another 20+ years.
Meh, no point in thinking this way I guess. What's done is done.
Hope never dies. It might go temporarily, but it always seems to return.
The odds may be stacked against us, but a lot of us still have as much of a chance as anybody else at doing exercise.
I've done 2 classes of badminton now, and though I may ache after for a while afterwards and the room is super-bright which irritates my eyes, I enjoy it.
Surely we (with the adrenal fatigue/thyroid problem) can recover if we eliminate stress and take the relative supplements.
I'm pretty sure I never felt this run-down and tired until the last 2-3 years, and I took Accutane 5 years ago.
Whether that's due to my own mental-stress or Accutane is still wrecking havoc, who knows.
But it must be possible for us to overcome this to some degree.
I just don't understand how we'd get worse, with a good diet etc.
Surely, someone like us has learned to live again.
Not necessarily someone who took this drug, but another that caused them problems.
We must be able to get through the darkness shrouding us at the moment.
We just need to learn to love life again.
With that said, I'm going to pop on Zelda: Skyward Sword for a bit.
Not that it's going to magic away all these problems.
Everything I've learned these past few months, from health-books, says we can recover.
The Liver is the most resilient organ of all. You can cut it to 1/3 of it's size and it can fully grow back.
So I don't understand why we have liver problems.
I speak for myself, but I don't have any alcohol and my diet is good.
Why isn't it helping?
There has to be a logical explanation.
We can't have ruined our bodies for life?
Chin-up guys, this can't last forever.
"Chin-up guys, this can't last forever. "
Dude... what? Why are you lying to yourself?
It can, it does, and it probably will.
Let's be real. It will probably get progressively worse until it kills you... slowly.
Hello? Look around. Read the Rag forum. This thing is permanent and eventually fatal, at the minimum in the sense of reduced life expectancy. This is a severe drug injury with DNA and organ ramifications. Full stop.
I've followed your case as closely as possible with the info you've provided, and I don't think that the failure of the supplements you mentioned impacts my probability estimate of success with this treatment plan.
There is no universal cure because Accutane injures different people in different ways, and because people are innately different.
In your case, two things are not at all clear:
1. That you have intrahepatic cholestasis
2. That you have eliminated food irritants
In my case, two things are pretty clear:
1. I have intrahepatic cholestasis
2. I have eliminated food irritants
As I've said before, I don't think you personally can progress until you eliminate food irritants to surface your true remaining symptom set. Then you can better diagnose which systems are damaged, and how. You can also learn a lot by comparing food sensitivities pre Accutane to post Accutane.
You don't have a comprehensive lock on that info yet, so you're just taking shots in the dark. Even if you found something that worked, you wouldn't know it, because the success would be masked by ongoing food inflammation responses.
Now it's true that there are major unknowns remaining for my case. They mostly involve the question of whether I will need to do some form of detox or ongoing permanent supplementation, and also whether there is some less immediately threatening long term damage to other biological systems.
But as far as treating intrahepatic cholestasis, that's a well understood area with an excellent prognosis for an otherwise healthy person who knows how the injury occurred (i.e., that it is not some progressive genetic incurable condition). And fixing intrahepatic cholestasis, from everything we know about Accutane and the liver in general, in turn predicts a major improvement in health and long term prospects.
Answers to other questions/statements:
"a lot of us still have as much of a chance as anybody else at doing exercise."
I think you know that's not entirely true.
"I'm pretty sure I never felt this run-down and tired until the last 2-3 years, "
8 years here. It's progressive.
"But it must be possible for us to overcome this to some degree."
Not necessarily.
"I just don't understand how we'd get worse, with a good diet etc."
The diet may not be good, Accutane may still be circulating, or telomere, liver damage, etc may be accumulating.
"We just need to learn to love life again."
Biology trumps willpower.
"With that said, I'm going to pop on Zelda: Skyward Sword for a bit."
Manage the pain/boredom however feels best, but use all available energy on rigorous intelligent pursuit of a personal cure.
"Everything I've learned these past few months, from health-books, says we can recover."
Prophets of death don't sell books. And dead/dying people don't buy them.
"We can't have ruined our bodies for life?"
You'll find the optimal approach faster if you stop clinging to baseless assumptions.
"Chin-up guys, this can't last forever. "
Dude... what? Why are you lying to yourself?
It can, it does, and it probably will.
Let's be real. It will probably get progressively worse until it kills you... slowly.
Hello? Look around. Read the Rag forum. This thing is permanent and eventually fatal, at the minimum in the sense of reduced life expectancy. This is a severe drug injury with DNA and organ ramifications. Full stop.
I've followed your case as closely as possible with the info you've provided, and I don't think that the failure of the supplements you mentioned impacts my probability estimate of success with this treatment plan.
There is no universal cure because Accutane injures different people in different ways, and because people are innately different.
In your case, two things are not at all clear:
1. That you have intrahepatic cholestasis
2. That you have eliminated food irritants
In my case, two things are pretty clear:
1. I have intrahepatic cholestasis
2. I have eliminated food irritants
As I've said before, I don't think you personally can progress until you eliminate food irritants to surface your true remaining symptom set. Then you can better diagnose which systems are damaged, and how. You can also learn a lot by comparing food sensitivities pre Accutane to post Accutane.
You don't have a comprehensive lock on that info yet, so you're just taking shots in the dark. Even if you found something that worked, you wouldn't know it, because the success would be masked by ongoing food inflammation responses.
Now it's true that there are major unknowns remaining for my case. They mostly involve the question of whether I will need to do some form of detox or ongoing permanent supplementation, and also whether there is some less immediately threatening long term damage to other biological systems.
But as far as treating intrahepatic cholestasis, that's a well understood area with an excellent prognosis for an otherwise healthy person who knows how the injury occurred (i.e., that it is not some progressive genetic incurable condition). And fixing intrahepatic cholestasis, from everything we know about Accutane and the liver in general, in turn predicts a major improvement in health and long term prospects.
Answers to other questions/statements:
"a lot of us still have as much of a chance as anybody else at doing exercise."
I think you know that's not entirely true.
"I'm pretty sure I never felt this run-down and tired until the last 2-3 years, "
8 years here. It's progressive.
"But it must be possible for us to overcome this to some degree."
Not necessarily.
"I just don't understand how we'd get worse, with a good diet etc."
The diet may not be good, Accutane may still be circulating, or telomere, liver damage, etc may be accumulating.
"We just need to learn to love life again."
Biology trumps willpower.
"With that said, I'm going to pop on Zelda: Skyward Sword for a bit."
Manage the pain/boredom however feels best, but use all available energy on rigorous intelligent pursuit of a personal cure.
"Everything I've learned these past few months, from health-books, says we can recover."
Prophets of death don't sell books. And dead/dying people don't buy them.
"We can't have ruined our bodies for life?"
You'll find the optimal approach faster if you stop clinging to baseless assumptions.
Thanks for that.
First, I just want to say in response to you advising I use my energy towards a personal cure - I have tried that. I am trying it.
However, certain things aren't in my control.
We don't know the facts or what this drug has done.
My adrenals are shot - fact.
But why? Undetermined.
Forgive me for passing judgement, but you don't appear to be happy.
I used to work full-time and spend my nights searching for a way out of this.
That just made me more and more depressed.
I'd just hear more horror stories.
Hence why I stopped looking for answers.
P.S. Zelda SS is amazing. Just saying.
Like me and James (jmsil) said, we had a hair analysis done for food sensitivies (and vit/mineral deficiencies).
We did have some marked against us, but we certainly don't need to reduce pretty much all food.
That's not normal.
But carry on if you think it's working for you.
Personally, I'd get very very bored of rice and fish. Fuck that to be frank.
Food was meant to be enjoyed, alongside helping us live.
I'm not trying to influence anybody else in here.
If you want to try all those supplements, do so.
But I've spent a lot of money, and it's not possible to tackle this thing all at once.
I don't understand what you mean by this being fatal though.
I've never heard of anybody dying (apart from suicide of course) from taking this drug.
Sure, it may cause you crazy amount of stress which will shorten your life.
But where's the proof that people have died?
What does it say on the rag forums?
If I do think the opposite to what I said above - i.e. 'We can't have ruined our bodies for life?" , what's the alternative?
Lose all hope.
It's not like I'm not trying to get over this.
I'm doing the best I can.
As we all are.
Just to reiterate - Adrenal Fatigue is very much responsible for food allergies/sensitivies.
It's also related to sex-drive.
Fix the adrenals, and we may get on the right track again.
I used to get stressed in the early stages about going red (barely ever an issue now), sweating and my red/dry eyes.
If I were able to get to just that stage again, I'd actually feel fantastic.
The mental issues are the worst really - Low energy - leading to brain-fog, decrease in ability to concentrate etc.
The depression and anxiety can drive you mad too.
But again, these can be related to adrenal fatigue (as well as thyroid, or just about any unhealthy organ).
I say, we're doing our best and shouldn't be trying any harder.
It's not healthy to put 100% of our energy into getting better. We can try as hard as we like, but until we know what the real cause of this is, we'll get stuck.
I say - Do it by the book. Perhaps a Paleo diet. But, have a fucking chocolate bar if you want one. We deserve a treat.
I'm just trying to point out that we can still enjoy things, if we just let ourselves.
We know there are people with worse problems than this, even though we've been screwed over by the people who are meant to protect us (e.g. the FDA).
So, we should make the most of what we have.
Damn straight, we're going to get down on days while we're like this.
But until we're able to make progress, there's no point in spending the rest of our lives missing out on everything.
Just my opinion. If you don't like it... well, that's just fine.
But, you said about me stabbing in the dark...
Yet, you've guessed your way to 4 foods that apparantly satisfy you.
You cannot be allergic/sensitive to all other foods.
An apple isn't going to harm you is it?
Fish and rice for every meal - fuck.
Good grief, so many essays.
Stefan, in reply to your question about grains; ditch 'em, and never look back. There's not a single good thing about them at all, and the amount of damage they cause both in the short and long-term are catastrophic. You will never recover if you continue to eat grains in any quantity, especially if you have digestive problems. I could explain why, but this article does a far better job in doing that: [Removed]
As for white rice being an exception (and the preference over brown rice), here's why: [Removed]
As for the newer posts by some new faces, it's unfortunate to hear that you all haven't recovered during all these years. Saying that, my hopes haven't been dashed in the slightest. Why? Because:
- We don't know your backgrounds
- We don't know your lifestyles
- We don't know what foods you eat, nor the timing of your meals and the amount of calories you have on average per day
- We don't know the specific symptoms you suffer from, nor their severity and regularity
- We don't know how you manage stress
- We don't know what exercises you do
- We don't know your sleeping patterns
- Etc etc.
The only common link between us all is the fact that we took Accutane. I'm not downplaying the impact it has had on all of our lives in the slightest, but at the end of the day we're still individuals. Dashing our hopes away at the tip of a hat by a number of anecdotes isn't gonna cut it, because there's so many factors that come into play which either guide us down the path towards recovery or illness.
I've always got my eye on this thread, but I only check every couple of days or so; all the best!
I tried the fish/shrimp/scallops rice dish. God, vile! I don't know how Joseph does it.
I mostly agree with avoiding most grains but white rice. I can do peeled and boiled potatoes with the water drained off, but some can't.
I have also tried most of the supplements Joseph mentioned - glutamine, the liver phytosomes, milk thistle, coconut oil - and not been helped long-term at all. There's a brief rush from trying something new. The body shifts, one feels something. But then nothing lasting. Of course one should try it if they feel like it. Personally I know those are not helpful.
It's not clear that liver regeneration is the central issue. A small amount of stimulating liver type systems is useful; better than not doing them. But that's all.
I wouldn't assume it's the liver, or anything in particular beyond what is known.
In terms of diet, I got a bit better when I added in a lot of butter and cream to my diet. At least I got more calories.
I wonder how many people here are ectomorphs? It seems people with less body fat get hit harder and in a certain way, especially if they are male. That fact was noted by Bart Stupak, the US Congressman whose son died after taking accutane.
One piece of perhaps good news, idk: I did have a something close to a relative cure/remission for about a year around three or four years ago. It wasn't complete. But if I compared myself to the frequently sick and obesse population at large, I was doing at least alright.
I'm still trying to figure out what I did. If I get it down I'll share it here ofc.
Good timing my friend.
Funny you should drop in with that too.. Because I just bought Mark's book: Primal Blueprint for the Kindle.
I'm aware Paleo is about cutting out grains, but I'll miss Oats to death!
What do you have for breakfast on Primal?
I feel better now.
I still allow the horror stories to get to me when I hear them, but I've got to do the best I can and be happy with it.
My diet has changed a lot over the past months.
Treating myself out twice tomorrow though.
Meeting up with a friend for lunch tomorrow and in the evening I have a 3-course meal with my drama friends.
Christmas Turkey! Yum!
Bye!
With the aquatic ape diet you're supposed to be able to add some regular meat, like beef or pork or poultry, to the scallops-shrimp-rice. It doesn't have to be tuna.
I tried the tuna and thought it was virtually inedible.
Also you're supposed to be able to add peeled potatoes.
The general idea of cooking rice and neutral starches (peeled potatoes) to a meat, herbs, and small amount of vegetables does aid digestion.
Cooking in water is generally the healthiest no matter what.
Here's my liver tonic. This has been working for me lately. It's pretty simple.
Gin, 10-15ml (about a tablespoon)
Tonic water, ~75ml (Schweppes)
squeezed section of ~1/5 of a fresh lime
That's it.
Like with a lot to do with alcohol post-accutane, use small amounts.
What happens for me is I will feel groggy, sometimes angry (use carefully!), and then it will fade in an hour or two and I will feel clearer and more energized. Unlike a lot of treatments it seems the effects after the grog fades seem more right, more balanced. It's like the combo yanks something out of my system.
A lot of alcohol is poisonous to me. This combo seems more healing and clarifying.
Liver tonics don't need to be complicated or expensive. Natural foods can have more general effects rather than some drug or herb that is very targeted. It's not clear what the problem exactly is, so a more general effect can be a better approach.
I take this 2-3 hours before bed. That way there is time for me to wind down. Again, use with care, don't get too angry, and don't substitute anything if you want to try it.
Some people might heal from accutane or don't get affected as much because of some odd food or health habit no one would even think to notice.
Your adrenals MAY be shot. Don't forget, I had chronic fatigue too, worse than you, but it was caused by food irritants. I also had all the psychological symptoms you describe. I can easily recreate them by eating something wrong.
If you actually knew the specific body system that was broken, you could get tests done and start targeting that system with effective treatments. But you don't know for sure, hence the lack of progress.
I'm happy. I would be happy if I knew I was going to die tomorrow. My philosophy of life does not include lying to myself. It's counterproductive. Optimism bias is productive, but don't bend the facts.
You contradictorily claim to be still searching for a cure and also that you've stopped looking for answers. It sounds to me like you've gone about it unsystematically and therefore grown frustrated with inconclusive results.
There are no food sensitivity tests that can reveal the full extent of your irritation spectrum, particularly since Accutane probably increases Leaky Gut.
Yes, it's not normal to need extreme elimination diets. It's also not normal to ingest massive doses of synthetic Vitamin-A-like compounds.
Elimination diets are about establishing a baseline. Then you expand from there. I doubt you'd be as limited as me. There's no reason to think you'd need to eat only rice, fish and shrimp for longer than a week. Just add one food at a time and observe the reaction.
If you read the rag forum, you will find a litany of problems that are shortening people's lives and sapping their will to live. You can also see some of the court judgments for severe organ damage that have been handed out. It's early yet but I fully expect reduced life expectancy to show up.
There are many ways to ruin one's body for life, and Accutane is one of them. The key to hacking your limitations is to get a clear sense of where the inflexible boundaries are, then work around them. You're trying to skip part 1.
------
As far as indulgence in a chocolate bar, no I can't. Need for indulgence is biologically determined. The weaker you are, the more you need. I've learned to indulge in other ways.
I did not guess my way to this diet. I did a ton of reading and research into human evolution, and all schools of diet theory, while testing those theories via methodical self-experimentation.
I can be sensitive to all other foods, and in fact I am. I have repeatedly tried to add another ingredient, and failed every time. Apples, like all fruit, ferment in my colon due to sugar malabsorption and inability to break down plant fiber.
I am going to put in a full day's work today, because I am 90-100% healthy. My Circadian rhythm is normal. I am under control, and the supplements I need for reversing long-term damage are on their way. That is worth a brief period of eating a bland diet.
-----
TheSpy, sounds like you've got a good understanding. How's your progress coming?
-----
Lukez, are you sure you were eating it hot, with extra water like a risotto? I don't think it's THAT bad.
I wasn't saying liver regeneration was the central issue for everyone, just for me.
If you can tolerate butter then you're clearly suffering from a different set of symptoms.
Yeah, I've always had low body fat. Interesting point.
If anyone tries my gin + tonic + lime tonic, make sure to drink 1 to 1 1/2 cup of spring water afterwards.
Forgot to mention the water. It still seems beneficial so far.
Joseph,
Yeah, I cooked it with extra water. That's the way I usually cook anyway. I don't like fishy foods so no surprise I find it very unpalatable.
Re: symptoms, butter, liver. I don't think my symptoms are different. I'm starting to think from reading here that the approach to dealing with accutane poisoning goes through a series of phases that seem logical at the time.
I've been through very similar phases of trying to deal with it - the liver focus, the gut focus, the supplements, the extreme dietary focus.
These phases probably have something to do with our age, how accutane's side effects hit us as we age, and what seems right to cope with it at the time.
I had to train my body to take in more fat, including dairy fat. Once I did I realized it just wasn't the problem. Mind you, I did that when I was older, in my early 30s.
We definitely don't have the same thing. My body will not adjust to fat intake, and alcohol even in miniscule amounts screws me up.
If you wanted to try the AAD, since you can digest fat, you don't have to eat fish. I'd recommend pork - they're semi aquatic and have lower iron than beef. Beef maybe once per week. Plus they metabolize a grain diet to a better omega 3/6 ratio than poultry or ruminants.
You still need shellfish regularly, and I'd throw in seaweed too. Those meats, rice, and nothing else would form a pretty good baseline.
What Luke has said is bad news, but it's not expectly a surprise. I've read quite a few stories now of people who took this drug in the 80s has are suffering today from it. How they have put up with it for so long deserves a lot of credit. Luke - This may be a too personal question, but you say you haven't been able to have a normal life because of this drug, is it possible you could tell us how this drug has effected you and how you haven't had a normal life? If you don't want to, that's fine.
Although what joseph has said is pretty blunt and not what anyone wants to hear, it does seem progressive. That's based on my experienceand based on everyone elses experience I've read on web forums. I still haven't read ONE success story where after years off being off the drug, that the side effects stopped completely. Any success I've read seems to be those who suffer from very minor side effects that eventually go within months usually of being off the drug, maybe a year, or maybe even two years. But I haven't read things really turning around after that.
Has anyone seen Brown Spots profile picture, or been following im recently? There is absolutely nothing wrong with his face and he's been moved up to 60mg a day... and he's only 14! What are these doctors doing FFS? Despite all the warnings we gave him, it's still not his fault. The drug just shouldn't be an option, and he is innocent in this, as we all are. I know I'm repeating what's already been said, but for what Roche, the FDA, doctors/derms that give this out, have done, is unforgivable, and I'm just glad that the internet is exposing them for what they are. Peoples real life experiences, the thousands and thousands that are online, maybe more, don't lie. Nor do the lawsuits.
Coolguy gave me the link to where he found out the proof of Accutane being the 3rd most reported drug for side effects.
Here's the quote:
"Accutane is one of the top three drugs for the most reported adverse side effects on the FDAs database."
The direct link doesn't work for some reason, but if you just type acutane in the search box, and clcik on the first result, you'll find it. I hope coolguy doesn't mind me posting it.
[Removed]
Yep, this is no game. We are playing doctor/researcher/pharmacist now, and the stakes are our lives. You have no one but yourself to blame if you don't bring world class rigor, discipline, and work ethic to the table.
Personally, I refuse to accept a life performance that is less than the top .1% of the population. I will do whatever it takes to get there.
Brownspots never had severe acne. It looked mild.
No, it's not his fault at all, but we gave him enough reasons to not take the drug and he did anyway.
If he gets side effects, he got them knowingly.
Sure, it's still not his fault. He isn't old enough to make a decision this big, but the medical industry is corrupt.
Despite our terrible, God-forsaken situation, we learnt a lesson.
Many people will fall into the life-shortening cycle of drug-taking.
I didn't even think it at the time. Drugs! Humans never needed them.
But there we go. These are the cards we've been dealt.
It's up to us how we deal with it now.
Joe may have a blunt approach (and possible even come across as an ass.. sorry, but it's true) but I think he's right.
Our digestive systems our fucked. (How's that for blunt?)
Our gut needs healing, and I reckon he's right about allergies.
I don't know about that hair-analysis test.
I've not really given it a fair trial.
But that's going to change.
I had a three-course meal last night (Christmas with the Drama crew..) and I just felt like shit after.
They all went out drinking/clubbing and will be at work now.
I just woke up tired.
I think you'll agree we have the will-power, but power without direction is useless.
TheSpy has always come across as a good guy, so I checked out MarksDailyApple.
I found this...
http://www.marksdailyapple.com/forum/thread34437.html
Looks like the original poster has improved her gut problems.
I've messaged her to see if she has any other side effects, or if they've improved from following Mark's advice.
I bought his book (Primal Blueprint) on the Kindle and will be reading it.
It's probably not far off what we know anyway, but (as already mentioned here) grains are a no-no.
I've not yet found out why that is, but I'm sure there's a reason.
The book seems to be highly thought of, and I'm still optimistic enough to think it could help me (and us).
It's hard to find a starting point with all this, but the digestive system is obviously up there in terms of importance.
All I know is I want to feel like I'm doing something.
It certainly is dis-heartening to hear the side effects don't go away after even 20+ years, but perhaps we can still do something.
Miracles can happen. Maybe we can be proof of that one day.
But I'm sick of feeling like shit. Winter doesn't help. I'm a Summer/outdoors-walking kinda guy. Fucking love Nature these days.
I mentioned beforehand that Sergio told me about a girl getting rid of her side effects after a few years of living with them (whatever 'them' was).
Thing is, she didn't seem to do anything to get rid of them. Though she was apparantly a high-spirits kinda girl.
It's not much to go on, but it gives us a reason not to throw in the towel and give up.
We still have time, and there's a good community here now.
Some really bright people who could do great things one day.
With us pulling together and trying different things, maybe we can get what we desire.
Like you've pointed out, this drug is well known as a baddie by those who have heard of it.
The internet is a good thing in terms of people coming together.
I expect that one day, maybe not too far away, a greater amount of people will come to realise that medicine is bad news for health.
People take health for granted though, and most won't bother researching it unless it's their profession or interest.
Lately, it seems I need to pee a lot.
Not sure why. Probably not a good thing.
I drink a lot of water anyway, but recently I've been getting sudden urges to go, and I need to pee once an hour or more.
Anyways, I'm off for a walk... in the cold English winter.
Have a good day
I feel low right now.. I need some sort of escape.. there doesn't seem to be any real way out of this...
Joe, I need your thoughts on this. It's probably something that won't go anywhere but I just need something else to believe might work,. I don't know where oy ulive, but on I'm a celebritiy get me out of here, they stay in the jungle for 3 weeks eating rice and beans every day. they may eat a little more food on top of this if the celebrities win extra food, but otherwise it is only rice and beans. now it has to be rice and beans for a reason. it surely has to give you every vitamin and mineral you need. with that sort of show the nutritional balance has to be right. i don;t know though if they use white or borwn rice, or what variety of beans. i know it would be ver boring to eat just these foods, but they do it. maybe this could be an elimination diet? I'd rather eat this then the sea food and animals. obviosuly the rice is already something you have anyway. thing is im sure im allergic to rice, but maybe the rice (which was made in the pasta i mentioned) was brown, and maybe white rice is different, and may not react badly too it? or maybe rice is just rice, and i will. i know this probably sounds desperate but i am right now. i need somethig to work. joe - your thoughts on this would be good.
I spoke to someone who did the Primal diet (Primal Blueprint) to get healthy after Accutane.
Unfortunately, they've advised I don't bother trying.
However, I've emailed them again because they told me they're healing through supplements, following various appointments with a bioligy/health expert.
I'll let you know if it's worth telling about.
Rice and beans is unlikely to cure this... just my opinion.
Are any of you reading, or have you read, books on dealing depression?
I've read some in the past, but I think I need to apply the tools better.
We certainly need to find a way to better deal with this because we cannot expect a change in the coming future.
But I know it's hard.
I had one of those days yesterday.
Suicidal and all.
But, here I still am.
Rice and beans may not cure on it's own, but I truely beleive along the lines of joe, that I could be doing me body harm by unknowingly eating foods that's making me worse. and that is scary as my variety already isn't much. but by taking away foods that i may be alleric to, i may get an increase surge of energy. i might be able to run on my treadmill. it's all about energy to do things. once the energy is back maybe the body can heal. eaing the wrong foods defiantely takes away the energy, as you said last night when you said you had the Christmas dinner. Allergic foods doesn't mean you will choke to death but can decrease your energy without knowing.
Unfortunately the Hair Analysis test only did sensitivities. Which aren't as bad as food allergies. I also find it hard to believe that i wasn't deficient in Vitamin D seeing as i don't supplement on Vit D, or go out in the sun, and that it was October that i did the test when there is no sun, and that Accutane sufferers supposedly have less Vit D anyway.
About the suicidal thing, I'm not going to lie, I've looked into it. Abnd im still here to.. why? Because theres no such thing as 100% success.. infact the majority are failures, and I'd be in bigger trouble then i am in now. If i could switch myself off right now, i would. But... if only it was that simple. Looks like I am forced to deal with what Accutane has given me. Have I said before how much I HATE Roche?
About the depression, this is where my and you differ a bit about tryi, or thinking you can deal with it. The way I see it is simple: My health is shit, I've got a great reason to be depressed. I can't see anything changing until my health comes back. It's all interlinked for me, where I physically need to get beter first. I just can't think positive, thinking it may get better in the future, because that is not enough, plus I don't beleive it will get beter either.
I thought if you have allergies you'd know straight away.
You'd choke or something. So sensitivities don't necessarily cause any problems?
Fuck though guys, I'm so sick of everything right now.
My Mum and Step-Dad are just putting pressure on me to sort out my depression, as if I'm not fucking trying my best.
My girlfriend got pissed off at me yesterday, and ended up crying to her Mum who subsequently said I was a fucking ass-hole on the phone to her (which I heard) and then came round to talk to me.
I'm sick of being made out as someone who's making shit up, like a hypochondriac.
Jesus fucking Christ I need a lifeline.
How do I get out of this piece-of-shit-situation?!
Ahhhhhhh, why do we fucking bother.
I so feel for you... I feel I have that sort of pressure from my family too. I feel I owe it to them as well to get out of this situation, because I don't like this impacting on them either. I also feel for the problem with your girlfriend/her mum. I also had this problem when I had a girlfriend. You try your best but no-one underatands just what you are dealing with, and that you mean absolutely no harm to anyone else. You've just got to remember that you are NOT the bad guy in this, even if it seems like it to others.
About the food allergies, here's some text:
"SYMPTOMS OF FOOD ALLERGIES
Jmsil,
You're feeling low and you want to know how I haven't being able to have a normal life?
Oh man. You might be sorry you asked. I'm not the type to sugarcoat any of this.
I just finished writing it all up but I'm going to save it for a bit. Indigo also is pretty down. I'm not sure this is the best time to post my personal experiences.
*sigh* alright, you asked. I just finished writing a summary of what helps me the most over the years, so I feel a bit better about sharing the grim facts of my life.
So bad news first:
There is nothing the side effects haven't affected. No girlfriend for most of my life. The ones I have had were not ones I would have had if I wasn't sick. Compromised sexual sensation. Dr Kevin Pezzi writes about this and notified Roche years ago about the problems but of course they ignored/buried it.
Honestly, that alone just burns me. I've missed out on very fundamental parts of life that girls never really understand. I won't say more on that now.
Massive health problem adapting physically. If I work out even moderately I will get sick. Diarrhea, extreme soreness for days. My body just won't adapt anymore, which in one way or the other is the problem across the board. This has now been going on since my teens.
Haven't been able to complete school. No career. Work is extremely difficult. Finding anything that fits for my condition is very difficult. Friendships very difficult to maintain. I can't do regular social activities. I get irritable. The condition is odd and people judge me in the same way you are being judged.
I'm almost 40 and am about to start a minimum wage part time job. That's about as good as it gets for me.
In the past I spent years working a couple days a week, spent three days recovering, and had two days off before doing it all over again. A living hell. Or just scrambling year after year just to survive financially.
Almost everything I've done in the last 24 years is just trying to heal, to cope, due to this shitty drug. I've spent my life trying supplements, thinking the next healing program will work, then having it not work.
Endless bouts of depression, but this problem is not depression, so the anti-depressants make it worse.
As I explained to doctors countless times you would be depressed too if your body won't adapt, if you're always tired. IT'S A PHYSICAL PROBLEM. Caused by being poisoned by the medical system's drugs! The feeling bad emotionally is a consequence, not a cause.
Any semblance of a normal life with health, money, work, relationships has been ripped from me. I didn't know it was accutane until about ten years ago when I put it all together after a lifetime of searching and trying to figure out what was wrong.
Even then, not having official confirmation like what exists now -- Dr. Bremner's book, and Roche discontinuing it, and the lawsuits, and Dr Pezzi writing about it -- made me unsure back then.
Also there was no cure. Just shots in the dark about what to do.
Sorry I don't have better news. I pretty much know the cycle of what people go through with this. Primal diet may help but likely won't cure you. I've tried that too. There never will be a cure if 'cure' means being back to what you would have been. There are ways to cope better. There might be a way to build new pathways in the body that would make it at least functional, but that's just a hope. I don't know if that is a realistic prospect.
I do have a summary of advice and things that at least make it more tolerable that have taken me years to put together. I've written a good amount of it here already. The white rice, the cooking it in water with meat, the liver tonics. I also have some observations of common patterns of what people are doing when they say they become better.
More on that later.
Hey Luke,
Thanks for the reply.
I was really anticipating something bad, and of course it is - But it's nothing I don't know myself.
I think you deserve a pat on the back for carrying on through this.
Life can be cruel and none of us knew this could happen from a drug for acne.
However, I have to comment on some things you've said.
You have every right to be extremely angry about this whole thing. Just as we all are.
It is a fact that we've been betrayed by the very people who say they are protecting us (FDA) all because of greed.
Some people have trouble accepting the mind-body connection, and the spiritual aspect of our being.
There's proof now that the mind plays a massive part in health (stress kills/ the placebo effect).
By spiritual I mean... for example, the heart (not as a functional organ). It feels pain from bad memories.
It is believed that cancer is caused by many things, but there always seems to be a strong resentment.
Emotions definitely control much of how we function.
I have a girlfriend. I didn't think I would because of this.
Sometimes it is extremely hard to have a normal relationship because of all of this.
I spent tonight with her, and we had a great time.
However, it can interfere massively because of the sex-issue and I get depressed a lot.
I'm not able to be this amazing person that I should be.
She accepts that though. I'm sure not all girls would, but you need to realise you're own beliefs and self-image are stopping you from being with someone.
http://www.channel4.com/programmes/the-boy-whose-skin-fell-off
I watched this earlier, and I'd seen it in high school (before all this).
Watch it if you can. It's stuff like this that make you realise how much worse things could be.
The guy is a f*cking legend despite going through something unbearable.
I was watching the X-Factor tonight, and it just reminds me of what I could be achieving.
I've mentioned my passion for music. I'd love to be able to go on the show, but while I'm feeling like this it isn't possible.
All I know is this:
If we carry on relying 100% on a recovery in order to be happy, we could waste what we still have.
It's not easy, but I bet a real optimist would be able to get through this.
I've heard of a couple of post-accutane people feeling better mentally through helping their adrenals (with licorice root).
This is not going to be an easy ride and we will continue to fall, but we must get up again.
We have to be strong.
We have fallen into depression and our self-image is very poor.
We CAN work on that.
If you decide to carry on fighting, that resistance will just make things harder for you.
Though we must continue to search for an answer to this, we need to do so with patience.
In the present moment, we can work on our minds.
You may have noticed yourself - When you feel like a supplement is going to work for you, you get a rush of energy and start to feel good.
That's proof that we need to do things that make us happy.
No offense, but I don't want to reach the age of 40 and be in this/your position.
I understand the struggle with working, but I believe the problem is in the adrenals (caused by long term stress - which isn't your fault).
So try to keep that hope going. That's something to work on. I know I'd be extremely grateful to have more energy again.
If I can restore that, at least somewhat, I'll be able to do a lot more.
I speak for myself when I say I'm extremely ambitious, so this hasn't been easy for me.
I feel like so much potential is going to waste.
I don't want to settle as a regular person, working a shitty job.
I have some selective skills and one day hope to use them.
I dream that one day I will.
There are some wonderful people in this world.
I crashed my car when I first got it. Not badly. I was actually looking at myself in the interior mirror and didn't follow a corner.
I live in the countryside and this was a bit out of the way.
I didn't have my phone with me.
Lots of people helped me, and I was out of a ditch within 30 minutes.
So, remain hopeful about the future.
There is more chance than ever before that justice gets served.
This drug will be off the market within a few years. I believe that. Especially if it's number 3 on the reported side effects list.
There is still a big chance someone will sort this out for us.
I'm sure we're not the only people in the world looking for answers regarding this.
We can only do so much.
Not sure about you, but I check this site lots of times throughout each day, just to see if someone has replied.
And it doesn't help.
A lot of this IS in our mind and it's up to us to do something about it.
I feel like I've tried so hard, but I've not really.
I don't have a purpose (except to heal) when I wake up each day.
If I was working towards a goal, I'd probably feel better and have more energy.
We don't help ourselves sometimes. It's midnight and I should be asleep, but I'm typing away.
To conclude, I think we all need to take personal, individual action to cope with this better.
If we continue to fight, we will waste the precious energy we have and just make things worse.
We need to accept the current circumstances, and make the most of them.
Luke, when you say something like 'That's as good as it gets for me' you're limiting your options.
If that's what you believe, you won't feel like you deserve anything better.
Of course your mind isn't the problem alone, but I'm sure you can improve your outlook with practice.
Forgive me if I'm wrong, but I'm sure you can do some light exercise in the form of walking/yoga.
I think we need to treat ourselves like we would a small child.
We're far too harsh on ourselves.
We should implement a reward model, i.e. keeping a diary and trying to meet goals (even small ones) which will help us get better. Once we've completed a certain amount, we should treat ourselves to something awesome.
If we don't enjoy the present moment, what's the point in living?
We do have the odds against us, but sometimes the underdog surprises.
Some people are able to pull themselves out of the most terrible of situations.
We need to live each day like it's our first.
As if it's normal to be like this.
Then, we can stop comparing our current self to our former (or imagined) self.
That's probably enough from me tonight.
Pat yourself on the back motherfuckers! You are amazing.